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Julie Campbell's story

My story begins similar to any other of it's kind; a couple awaits the birth of their first child full of hopes and dreams for a perfectly healthy baby. Wyatt James Campbell came into the world on March 13, 1998 at 5:04 A.M. welcomed by happy parents, grandparents and friends. But what we would soon learn is that our first time parent dreams would slowly but surely be crushed.

Wyatt's second day of life would prove to be very scary for us. He never eliminated the first stool called meconium and because of this he became distended and was immediately taken off breast milk and taken to radiology. the diagnosis was Hirschprung's Disease, meaning he was missing nerves in the end of his colon that signal the brain to eliminate the stool. He was rushed to Children's Hospital in San Diego to undergo further testing, which was very hard for new parents to watch. Later we were told by his surgeon that this was something successfully treated with surgery. We just had to take him home and manually help him "go" which I won't go into detail about). Wyatt needed to gain some weight and get a little larger to undergo the surgical repair in about six weeks. He didn't make it that long and at four weeks of age began hemorrhaging from an intestinal infection due to the stool that wasn't getting completely eliminated. So, he was taken off food again and after the infection was under control he had his first surgery: a colostomy. When he was about a year old, he could go through the second part of the surgery which would return his intestine to the proper position. We were very stressed about our baby going through all this, but we still had the confidence that after all this, everything would be perfect.

In May of 1999, at thirteen months old, Wyatt went through a procedure called a "pull through". We spent two weeks in the hospital rarely ever leaving his side, but on Mother's Day I finally got to bring my little boy home, who by this time was looking pretty scrawny. After lots of nursing him back to health he actually got cute little rolls on his arms and legs.

It was a joy watching him smile and laugh at us and his cocker spaniel but after a while, it became a concern of Wyatt's pediatrician that he wasn't crawling at fourteen months. I was so wrapped up in the health issues that I just kept blaming his slowness on all of his hospital stays (of which there were a few more that I kept out of this story). We got Wyatt set up with a wonderful physical therapist who really worked him hard! We saw improvement in his strength and balance but he was not so thrilled with the whole idea of having to work. I kept questioning the therapist about what could bring on these delays but she was very vague and just usually said she's seen this in premature babies.

Four months later on 9/9/99 ( I hate that that date is so easy to remember) when Wyatt was eighteen months old we got more depressing news, Wyatt had Cerebral Palsy. My husband didn't seem as shocked as I was and he told me he'd always had the feeling that something else was wrong. I was so shocked all I did was cry the whole way home and every day for many weeks after that awful moment I heard the neurologist utter those words. It's unfortunate they just send you away with this news and an appointment for a follow up visit in six months.We barely even knew what CP was and we had to navigate through tons of information we didn't probably need, for there is no way to predict what kind of life your child will have or what kind of impact it will make. When we went back and told the physical therapist, she just shook her head knowingly because she had already figured it out having seen the signs many times before. She couldn't tell us because she is not allowed to diagnose, only treat.

As the weeks and months passed, we enjoyed our little boy mostly in the privacy of our own home and with family. When other mothers were talking about what new things their babies were doing I smiled on the outside but cried on the inside because I couldn't say my baby was doing much of anything. Not all was bad, we loved our son more than anything on this earth and we used to say that every day seemed like Christmas and we couldn't wait to get up in the morning and look at that beautiful smiling face!

A really exciting thing happened a few days after Wyatt's second birthday-he began to crawl. We were so proud of him! It took another year when Wyatt just turned three that he began to take his first steps and that too was a joyful day. We enrolled Wyatt in swimming lessons in the summer and then added horseback riding, determined he would get to do the same things as other children, he just might not do them as well. He went to preschool, then kindergarten and soon everybody seemed to know Wyatt. He couldn't say more than a few words, he mostly "hooted" my word for the loud sounds he makes). But, his favorite word has always been a big "HI!!" and he'll have a big smiled on his face when he says it to anyone and everyone.

When Wyatt was about four years old he started having seizures. We were somewhat prepared for this, knowing it was common for kids with CP. He went on medication and we regularly see the neurologist. On one of these visits the doctor brought a name of a possible syndrome that fits many of Wyatt's "differences". Genetic doctors told us they classify his anomalies as a syndrome, but they didn't know which one or what to call it. Now they had a name, Mowatt Wilson Syndrome. Danny and I had taken many years to decide to have another child, but we were so afraid it was something we had passed on to him. After lots of soul searching and looking into all our options, we did have our second child five years after Wyatt was born.

When Wyatt and I were in the waiting room to see the genetic doctor to discuss just what this syndrome was all about, we saw a young girl a few seats down from us who was seated in a wheelchair. She appeared to have had her arms and legs amputated above the knees and elbows. I had no idea what had happened to this girl or if she had been born this way but I figured there's always someone worse off than Wyatt, and I am just happy he is healthy. On her wheelchair was a bumper sticker that read, "I'm in no mood to be stared at". So who do you think went right up to her with a big "HI!"? Wyatt. He proceeded to say hi to her about ten times until we were called into the exam room.

The geneticist told us about the conditions consistent with this syndrome and since Wyatt was already six years old, I had become very accepting of the whole issue, so there wasn't that same shock as the first time around. I just wanted any information I could get to help him. We already knew he was mentally retarded and learned that this was consistent with Mowat Wilson. Later in the visit, she told me if we wanted more children they could test the embryo for this genetic mutation and that it was not something we passed on to our son. I told her we had a healthy daughter and we weren't interested in having more children. I also told her that I wouldn't make that choice; to find out my baby wasn't perfect so I could terminate a pregnancy or toss out an embryo. I don't mean to suggest that doing that is an easy decision, only that if I had known about all of Wyatt's medical problems before I had laid eyes on him, it might have sounded too overwhelming to go through with. Being a Christian, I also have certain convictions about God's design for all of us, and I truly believed there was a gift that Wyatt had that I could nurture.

On the drive home I was going over all the information in my head, especially the part where I told the doctor I wouldn't want to find out this kind of diagnosis to determine if I would continue a pregnancy , after all I felt what Wyatt brought to my life far outweighed the difficulties. And then it hit me on the head like a ton of bricks-God had shown me the reason for Wyatt to be the way he is. Only someone like Wyatt could have looked at the girl with the missing arms and legs and not seen that, but the little girl inside that just wanted to be treated like anybody else. It was then I decided that what he had was not necessarily a handicap for him. I had more of a handicap in my mind because I couldn't look at that girl without some kind of pity or judgment. I knew now that God made Wyatt exactly as He wanted him, to teach others tolerance, love and acceptance no matter who you were on the outside. Wyatt is an inspiration to me in my relationship with God and others because he is the "Angel in my house".

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